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Unclear Test Results


Questions?

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Questions? Newbie

Test results: Deaminated Gliadin Abs, Iga 138(ABN:H)

t-Transglutaminase(tTG)IgG 6(ABN:H)

These were the only Abnormal results! The Biopsy was neg.

Dr now has me on a month of gluten-free Diet. I have asked if it would be wise to do the Genetic Testing and he has said No! I have been told in the past that I have some sort of Auto Immune problem. I had 9 miscarriges. I have had a Neice diagnosed as a child with Celiacs. A father with bowel issues and A brother also with issues and never diagnosed. Both not living at this time. I have had lots of bowel issues that I thought was IBS. I also have problems with Reflux. I have always thought I was Lactose Intolerant. Does this sound like Celiac Disease? What should I request as far as test now?

I would appreciate any insite at all! Thanks! Concerned for my Children and Grandchildren!


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ravenwoodglass Mentor

Your celiac testing was positive. False negatives with biopsies are not uncommon and the same with blood tests but false positives are almost unheard of. Your doctor gave you good advice but you may have some ups and downs while you get the hang of the gluten-free lifestyle. It is a good idea to eliminate dairy for a while as well as it may be hard to digest until you heal. Read as much as you can here and ask any other questions you need to. You may be a bit emotional at first as some of us do go through withdrawl when we stop gluten.

Questions? Newbie

Your celiac testing was positive. False negatives with biopsies are not uncommon and the same with blood tests but false positives are almost unheard of. Your doctor gave you good advice but you may have some ups and downs while you get the hang of the gluten-free lifestyle. It is a good idea to eliminate dairy for a while as well as it may be hard to digest until you heal. Read as much as you can here and ask any other questions you need to. You may be a bit emotional at first as some of us do go through withdrawl when we stop gluten.

Thank you for your reply! So you feel certain on those blood test! I have not yet seen the Dr. I have seen his PA and have a dear friend who works with this Dr. I see him the 23rd. I just needed someone to say yes this is the disease and not just sensitivities! I am just like you said uncertain and uncomfortable about it all. Thank you again and I love this site for help.

Skylark Collaborator

You have what's sometimes called "latent celiac" meaning you are in the period when you have antibodies but the intestinal damage hasn't accumulated to where it shows up on biopsy. If you keep eating wheat, it's only a matter of time until your intestines are a mess!

Go onto the diet like your doctor suggests, and please hang around and ask questions. It's a big change and we're happy to help you through it.

mushroom Proficient

Yes, I agree with ravenwoodglass, with those results, your symptoms, your family history, the 9 miscarriages, I would consider that you most definitely need to be on the gluten free diet. While it is a bit overwhelming at first, once you get the hang of it it is not nearly as difficult as some people make it out to be. Inconvenient, yes, but difficult? No, I don't think so. Stay in there and you will soon get the hang of it. :)

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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
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    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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